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Personal Reflections...
December 8, 1999...

The day the tremor began...and other early signs.


My first symptom happened a little after noon on December 8, 1999. I remember the exact time, date and even what I was eating at the moment: a sub! I was in an airport cafe with my husband waiting to catch a flight to Seattle. As I held my sub between my hands, my husband looked across the table and asked me why my right hand was shaking. I figured it was a lack of sleep coupled with a bit of a hangover; after all, we didn't get home from my office Christmas party until 4am that morning. I also have a PROFOUND fear of flying, so more than anything I figured it was nerves. We flew there, had a lovely visit, flew back safely...but I still had that tremor in my right hand. The tremor never went away.

My husband was very concerned because my right hand began shaking as we left for that long weekend on the West Coast and upon returning East my right hand was still shaking. It never stopped. He was adament I go see a doctor immediately. I went to see my regular physician who was this sweet woman close to my age who had helped me through many tramatic moments in my life and we were quite close. She told me "you need to see a neurologist" ( a single mother working full time and commuting 1.5 hours to and from work each day, I hardly had time for the long weekend I just took, let alone ANOTHER doctor visit).

I asked her what she thought I had and she said "Benign Essential Tremor". I just liked the sound of it, even though I'd never heard of it before. The Benign in the beginning I knew meant GOOD in Latin. Wow, something GOOD and Just what I needed. She said it was rather common and wouldn't bother me (OKAY, I have since learned of people with ET that are SO bothered they require brain surgery to relieve symptoms, so she was wrong on this too). Anyway, I told her I didn't have time to visit a neurologist and I liked her diagnosis.. She told me to PROMISE to see a neurologist if I noticed any other symptoms. I promised.

Had I educated myself about my symptoms early on, I would've seen right away that I did NOT have ET because my tremor was certainly a RESTING tremor. Ignorance is bliss, so I just "ignored" it the best I could. About 6 months later I noticed more symptoms. I was tired all the time, I was puking all day and I was more tired than ever. The tremor was still there, as always, but I was feeling it a bit in my right leg, too. A trip back to my doctor confirmed one thing: I WAS PREGNANT, but in reading everything prior to my visit with the doctor, I had also read a LOT about tremor and was getting concerned that what I had wasn't so benign after all.

My doctor didn't want to worry me. I had enough in my life to worry about and she knew that it's not easy to diagnose PD anyway. She did tell me to see a neurologist, but she couldn't force me. In all honesty, she would later confess that she suspected PD from the beginning but she was pretty certain it would take more than just a long weekend with a tremor to confirm a diagnosis. She told me again to see a neurologist,, but at this point my medical visits were spent with OBGYN's. Besides, I couldn't get any MRI's or other scans while pregnant.

As soon as my son was born, I went back to see my sweet physician. The tremor was getting more and more pronounced and I was beginning to drag my right foot when I walked.  Also, my right arm wasn't swinging when I walked and I was getting more and more stiff.  I also had two scary incidents that made me know I could no longer wait to see a doctor:  I fell over while holding my newborn and I also had my first freezing episode, where I couldn't even take a step. It was time to seek help...I'll never forget my doctor coming in to the examining room and confessing to me her concerns. She even began to tear up as she said, "You need to see a neurologist immediately. I'm not qualified to diagnose you, but I really think you have Young Onset Parkinson's Disease". With those words, I began the process of finding out why I had a tremor.

I remember when I was first going through the diagnostic phase with my neurologist, I had given him a long list of my symptoms. One of those was "jaw tremor"  that came about a year and a half after my hand tremor, but my jaw hardly ever tremors unless I am REALLY upset. This was one symptom the neurologist didn't get to witness...that was until the day he brought me in to give me my diagnosis. It's not like I didn't already know what I had (after all, I had just spent two weeks on PD medication and I had felt better than I had in years), but hearing it come out of his mouth brought me to tears. It validated my fears and I broke down in tears sobbing. My neurologist's first words to me after he gave me my diagnosis: "oh, there's that jaw tremor!” And so began my journey of Living With Parkinson's...
Lauren Sue

Photo by Lauren Sue